Hospital Pics and Life Post Stem Cell Transplant

Life is hard post transplant. I'm not going to lie. Really hard. By far the hardest thing I've ever done physically, emotionally and spiritually.

They try to prepare you, but I now know that they really can't.

My body is feeble and weak. My hands shake, my once strong muscles quiver when I attempt to walk. Eating and drinking prove to be incredibly difficult. Even painful at times. Nausea is always a constant battle raging inside of me. And why sleeping is so hard I'll never understand, because I always feel so tired.

I find that sometimes (like right now) it feels necessary to just let the tears run constantly down my cheeks. I cry a lot. I don't know why being in this state makes me so emotional, but boy does it ever! Maybe because I do so little and think so much.

Too much maybe.

Visits!

You have to be careful in your head. If the bad thoughts come in, you cant give them a place to stay.

What I have to do is acknowledge that I feel them. Then I can usually let them go.

Scary thoughts. Intense things that are often hard to say. Thoughts of death. Questions. Is my body fighting to live...or trying to tell me enough is enough? Can I really do this? Will this ever end?

I even sometimes have to vocalize them to my husband (bless his soul) and then once they leave my lips I often realize the truth.

My mom

Here are my truths.

I am fighting to live. Not for me. For my husband. My Jess. The love of my life. He has worked so hard to literally save my life. Raising money, taking over all the cooking and cleaning on top of his full time job. And then he still finds time to love on the kids and spend precious time with me. He always makes me feel like the most beautiful woman in the world no matter what. I know he loves me. He is one of my greatest treasures. I could write forever about him.

I am fighting for my kids. Over 3 years of their young lives have been eaten up by mommy being sick and often unavailable to them. Many people have stepped up and helped us care for them, but the guilt I feel is still there. I have to push it away often because it is out of my control. The kids deserve to have  mom. I will do everything in my power for them. They were 3, 5, 7 and 9 when I was diagnosed. They are now 6, 8, 10 and 12! It has been so long.

Spiritually I have grown. I have more to learn, but being knocked down so hard really makes you look at what you really believe. My Heavenly Father loves me and has not forgotten me and my family. I am always striving to put my trust in Him and my Savior, Jesus Christ. Christ suffered and died for us and I know that he knows my pain. He knows my anguish in my darkest moments. He will be there to comfort me, and my family, if I just have faith.

And I can do this...even if it never ends. I have gotten this far and I am way to stubborn to stop now.

My lil sis

My hubby

I have really learned to love life. The small things...because really, they aren't really small after all. It's the small moments that can matter most.

When I am strong and healthy one day (and it will happen)...this will be an experience that will help me always keep my life in perspective.

This post was really for me. I needed to just write. Just to cry and write.

Writing these things really help me to strengthen my resolve and fortify inside of me exactly what I'm doing and why I'm doing it. To kind of prove to myself what I believe and the things I know deep inside.

It helps to push away the doubt.

I'm grateful to be able to express myself. Thank you.

During transplant

Shaving the dome...again.

Going Crazy, Feeling Lazy

Whew! Today has been tough.

I am usually against writing posts that just list off my problems, but for some reason I feel like writing...so I write!

The blood booster shots that I get everyday (Neupogen) are really kicking my butt!

I woke up at 2am pretty much writhing in pain in my bed. Sorry to be so graphic with it, but it is painful. My poor husband woke to my cries...again.

When they say to expect "bone pain" that just doesn't prepare you well enough. I get a constant headache and ache in my muscles with the added bonus of feeling like someone is sticking a hot poker into my hips on both sides. Not all my bones hurt, just my hips, and it comes in waves. The pain often brings me to my knees though, and the headaches make me nauseous, and sometimes I do the cute cough-'till-you-gag bit. Veeery attractive.

While my dog loves when I spend all day on the couch, I don't.

I did manage to push through and drive my kids to school, take a ride with a dear friend and go to Mayo. Then I drove to pick the kids up from school. It isn't much, but I'm go grateful for even that much of a day!

Now to find peace in just resting and trying to manage he pain and discomfort.

I wish I was doing housework! Cleaning bathrooms, doing a mountain of laundry, organizing closets and cleaning floors sound like a nice way to spend a day. I can't believe I said that!!!

Hehe...oh well. Like I said, I just need to find peace in living my lazy lifestyle. Not by choice, but by force. I know I'm not lazy, I'm recovering...but I feel lazy.

The clock moves really slow sometimes when I just want to see Jess. Come home from work babe!!! I need a couch buddy!

Re-Diagnosis And Ready, Set, Go!!!

My adopted AZ mom, Miriam and I at the Mayo Clinic in Scottsdale.

 Today I started my new chemo regimen after learning that I was misdiagnosed 3 years ago. It was a very successful day. I always manage to talk some dear friend of mine to give up many hours of their day to come sit at a Dr office with me, and today was no different. I'm glad I don't have to ever be alone.

What a blessing!

I'm not the kind of person that typically needs a lot of alone time. Some is nice, yes, but I feel happier and stronger when I am surrounded by people that I can interact with. A "social butterfly" type of a person? Yeah maybe. I just love interacting with others and, although, if given a choice, I'd pick a much more fun way to do it, this is my opportunity right now. Writing and knowing that even a few people read it makes me feel so good. It makes me feel stronger, because I know that people are rooting for me.

My best friend, Kerry visiting me in the hospital at Mayo in Phx. 

After a 6 hour appointment and an hour drive home, the effects of the treatment were starting to hit me. I could feel my legs shaking as I stood and I was getting these crazy hot flashes, mostly on my bald head, and I was feeling the start of my old friend...nausea. 

Being home is much, much, much better than being hospitalized (uh, duh). It can be hard though, when all I do is say hi to my babies (ok, I know they aren't technically babies, but you mommy's get it, right?) and after a quick hug, Jess help get me upstairs into bed and I fall asleep for practically the rest of the night. I wake up, can't get out of bed yet, but I see them a few more times, then we say our family prayers and it is bedtime.

At least I get to hear them in the house. Playing, fighting, making messes, you know...just being kids! A mother's symphony.

This treatment is going to be hard and rigorous on my body. Five days a week of chemo, two weeks off, then repeat. Bleh.

All I can really think of right now is getting through this well...now that my diagnosis makes a bit more sense. I just feel so grateful that Dr Reeder was so persistent. Instead of looking at what I have been through and playing the game of "which things did I unnecessarily suffer through", I prefer to think about how much more I would've gone through with out these new findings. Years more of treatments that would be ineffective. I really dodged a bullet.

We always pray that my Dr can think with a clear mind and that he will be lead in the direction that our Heavenly father wants for us. Well, I personally fell like this is a answer to that prayer.

Gratitude, relief, and my good ol' stubborn determination are all I feel right now. I've been through too much to even think about giving up now!!!

Good news bad news.

We had an appointment today with Valerie's transplant coordinator to go over her crazy schedule for the next few weeks. She did an excellent job explaining everything that she was going to do and what to expect. As she was going through Valerie's record and test results, she noticed that the PET scan results were posted so she made a quick call to Dr. Reeder so that he can review them.

She continued to explain so much including the process for stem cell collection, medications, what to expect during her stay in the hospital, and the types of chemotherapy that she would receive. There was so much more and Valerie felt as though many of her questions were answered.

She told Valerie that the day that she receives her stem cells is going to be her new birthday and that the transplant was going to re-boot her entire system and especially her immune system. That was really exciting!

The good news. The chemo that she has been receiving is working to shrink to single solitary mass of cancer that is in her body. It was exactly as we expected and we thank God for this amazing blessing.

The bad news. It was not enough of a response the satisfy Dr. Reeder and move forward with the stem cell collection and following transplant. So, it looks like Valerie is going to have to do another cycle of the ICE chemotherapy and its going to set her back 3 weeks. Bummer.

We were so excited to move to the next step in the treatment but it looks like we have to wait. Thank you all so much for the prayers and support and please continue to share this site over email, social media, and your friends and neighbors. It is greatly appreciated.

Nose Sores? Seriously?!?

This poor girl looks like she feels like I do.

I've dealt with mouth sores in the past...but NOSE SORES?!?!

Thankfully not visible to anyone. They are inside my nostrils. They seriously hurt!

Ointments inside my nose? Gross.

Next Few Steps

I have just got through the hardest part of my second round of the new ICE regimen. Everything is progressing well and going to plan.

Next step, a PET scan, bone marrow biopsy and a spinal tap. All of those procedures need to cooperate! I'm ok with the first two...spinal stuff freaks me out.

Then on to the next two big things. 6 treatments of inrathecal chemotherapy (read, injections into my spine) and a stem cell transplant. Ouch!!!

To be honest I am nervous about both of these things. They are so invasive, but they are pretty near the only thing we haven't tried yet to get rid of this for good. That is why I proceed. The hope of a better future keeps me going.

One week at a time. I can do this. (I am constantly telling this to myself!)

Update: Port Problem Solved (sigh of relief)

Before I get to the meat of my post I wanted to remind myself why I blog. Probably so I'll do it more.

I've said before that I like to write for selfish reasons. It's for me. It clears my head and helps me organize my thoughts. After a good blogging session I feel like I've just been to counseling. Weird, maybe (probably) but it is effective and cheep! 

I also blog for my children. While my oldest son will probably have his own memories of what we went through, the other three are probably too young to remember any details. Even if they all remember, I want them to know what is in my heart and mind. That it was sucky and hard, but we did it, together. As a family we pulled together, held on to our faith, and ran with it!

PS...I must run too slowly. That's why I have a husband like Jess by my side to carry me through. Sometimes literally. 

OK. Here's an update.

In not knowing what to expect from yesterday's treatment, I am pleasantly surprised. Yay!

I feel sick, yes. I gag when I get up to walk, but the nausea seems to be under pretty good control when I lay/sit down. Fun. They do pre-medicate me with nausea meds, but I've only had to take 1 pill at home. My head feels "full"...if that makes sense. Not quite a headache, but it definitely not normal. My stomach is hurting so I really have no appetite yet this morning, but I'm drinking a lot. Juices from my juicer and lemon water, regular water makes me gag. Otherwise I am in great spirits, I can manage my kids (don't tell, but they mostly manage themselves), and so far I can tend to myself and the things I need...gagging isn't fun, but sometimes,unfortunately, necessary.

So far so good. Now with yesterday being my first treatment I wanted it to go as flawlessly as possible...of course! 

Well, I have this port under my skin right under my right collar bone. It is usually super convenient from blood draws, to infusions for treatment and even for contrast for scans. Yesterday was different.

The needle that is used is about as thick as a tack, but longer. It is kind if intimidating. I try not to make "eye contact" with it...it might see my fear! Hehe, just kidding, but I really try to never look at it. This is an illustration of how it works, and that is the exact port model that I have.

Well what they forgot to draw was nerves. The surface of the skin has many nerves. Nerves that can cause a lot of drama on my first day at Mayo!!!

I was accessed like normal. Sterile everything, both the nurse and I wear a mask, clean the area, then stab!

This is always a definite poke, but the feeling in the area goes away in about 20-30 seconds. I have had this needle in my chest for a whole week and it is barely a bother. Why does the feeling go away? I'm not entirely sure. I've always assumed that not many nerve endings are in between the thin layer of skin and my port. 

This time was different. "Ouch!" I cried out. It hurt a lot more than normal. Tears started to well up in my eyes and the overflow ran down my cheeks. My nurse, very concerned, asked me if that had happened before. Nope! My poor nurse did nothing wrong, she accesses hundreds of ports...why does my body always like to be in the 3% of things that people don't see often?!? 

Before I knew it I had 3, sometimes 4 nurses around me, asking me questions, examining the needle insertion, blood return and the skin around my port. I knew they had to figure out what was wrong...I wanted them to figure it out...but the more they touched the area the more it hurt. I tried my best to be cooperative and grateful for so much help, while tears ran down my cheeks. 

I learned quickly that a port that hurts isn't a good sign. They started to prep me to get treatment that day through a vein in my arm, and to have some sort of study done on my port to ensure that it is safe to use. You don't want chemo drugs getting anywhere they aren't supposed to.

They also paged my new Dr to come over and check me out. While he agreed with everything they were doing, he suggested trying one more thing. Re-accessing me. He said a nerve may have been hit. Although the sound of that was more pain, it was my best, most simple option. 

My skin around the port now felt raw and sunburned. Every time saline was pushed into it I winced in pain. So she removed the needle. AHHHH! It hurt, but at the same time, I felt relief. After a period of resting and re-cleaning the area (ouch) we tried again. 

This time I pulled the skin taught over the port to change where the big ol' needle went into my skin. Better!

The same nurse did the same thing, but with that minor adjustment to my skin, I already knew that Dr Reeder was right. We had hit a nerve. Hit it on the bullseye apparently. And this nerve was angry at us for disturbing him!

About an hour into my 4 hour treatment I could touch the port needle, the skin around it and move my arm without discomfort. I was so relieved...as was my poor nurse. But bless her heart for getting me the help I needed!

The rest of my treatment went flawlessly as it could and a few hours later Kerry was driving us home from Scottsdale. 

Whew! I did it! I knew I could of course, but with that extra challenge with the port needle hitting a nerve thrown in there, I had to admit I was feeling pretty proud of myself for hanging in there and toughing it out.

Well, I am going in today and tomorrow to do the same treatment. Good news is she left me accessed so I didn't have to risk that happening again. That's how much you shouldn't feel the needle...I slept just fine with it in, and I toss and turn a bunch.

Day two is going to be a breeze compared to yesterday...right?!? ;)

Right!